Jun 04 06:02
Harriet McBryde Johnson, 50, of Charleston, S.C., died last night. She was New Mobility’s person of the year back in 2003 and, in addition to being a practicing attorney, wrote prolifically on all things disability related, especially on the rights of people with disabilities to not be killed. Having spinal muscular atrophy, a form of muscular dystrophy, she was also a stalwart resister of the Labor Day MDA pity-thon.
Although I only met Harriet in person one time, I’ve exchanged e-mails with her lots, since we posted on some of the same listervs. Her thinking constantly blew me away. “I want to be president of your fan club!” I told her more than once over the years. She never took me up on the offer. Truth is, although she was always polite, I felt intimidated by her. She was a Southerner, I’m a Yank. She’s the definition of genteel. I’m a Pittsburgh Mill Hunky by birth. Genteel? I can spell it, probably can’t pronounce it right. She’s off-the-chart brilliant. And wow, could she write. In her hands a complex issue curtsied, unraveled, simplified itself, and fetched her a glass of sweet tea on the way to the page.
Take her article, “Unspeakable Conversations,” that appeared in The New York Times back in February 2003. It’s about a series of conversations she had with bioethicist Peter Singer. Here’s how it starts:
He insists he doesn't want to kill me. He simply thinks it would have been better, all things considered, to have given my parents the option of killing the baby I once was, and to let other parents kill similar babies as they come along and thereby avoid the suffering that comes with lives like mine and satisfy the reasonable preferences of parents for a different kind of child. It has nothing to do with me. I should not feel threatened.
Whenever I try to wrap my head around his tight string of syllogisms, my brain gets so fried it's … almost fun. Mercy! It's like ''Alice in Wonderland.''
She worked bioethics, utilitarianism, euthanasia, disability rights, Aristotlean logic and – huh? – “Alice in Wonderland” into one great, sweeping intro. Read the article, if you haven’t. You’ll begin to see what we lost last night.
We lose a lot of people in our community, it’s part of the terrain. But damn, sometimes it just hurts. And it never gets any easier.
Goodbye, Harriet. I still want to be president of your fan club.
Post a comment about this blog!
Jun 04 12:59
Excellent post, Josie.
I also noted HMcBJ's passing on three blogs where I post.
I never met her in person, but I emailed with her, and she was gracious enough to give me a "jacket endorsement" for my book.
I too felt somewhat intimidated by her intellect and drive, but she always treated me graciously.
Jun 04 04:36
I've known Harriet for over 40 years - we first met at the Charles Webb School for Crippled Children in Charleston SC. Harriet was the first to teach me that it was OK to be disabled. Until I met her I was extremely self conscious about being "handicapped" and didn't want to draw attention or even acknowledge that I was a "crip". Thanks to Harriet, I learned that crips were cool! She was an extrodinary individual and a wonderful mentor and friend.